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Rare Disease

Home » Rare Disease » Page 280
Applaud These 3 Institutions Making the World a Better Place
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Applaud These 3 Institutions Making the World a Better Place

  • Post author:Patient Worthy Contributor
  • Post published:August 7, 2015
  • Post category:Rare Disease

Three cheers! THANK YOU University of Kentucky, Addgene, and University of Pennsylvania We wait, and wait and wait for research and hope that it will bring discoveries in time. But…

Continue Reading Applaud These 3 Institutions Making the World a Better Place

Smoking with Spondylitis? What the Hell is Wrong with You?!

  • Post author:Patient Worthy Contributor
  • Post published:August 7, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

There are lots of ways to deal with stress. Some are healthy, some…not so much. For many, smoking is a “go-to” stress reliever. Never mind that it probably causes more…

Continue Reading Smoking with Spondylitis? What the Hell is Wrong with You?!
Breaking News! This New PI Drug Looks Promising

Breaking News! This New PI Drug Looks Promising

  • Post author:Patient Worthy Contributor
  • Post published:August 6, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease

BREAKING NEWS! There may soon be another treatment for PI patients! The company ADMA Biologics, Inc. has developed a new treatment option, RI-002, for patients who are immune-compromised. It’s currently…

Continue Reading Breaking News! This New PI Drug Looks Promising

She Took Weed for Chronic Pain, Now She’s a Believer

  • Post author:Patient Worthy Contributor
  • Post published:August 6, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Should marijuana be used for medicinal purposes? We obviously aren't the first to ask this question as the nation debates the use of the famous Jamaican herb. But if ankylosing…

Continue Reading She Took Weed for Chronic Pain, Now She’s a Believer
This Girl Got a Kidney for Her Birthday, And It’s Awesome!

This Girl Got a Kidney for Her Birthday, And It’s Awesome!

  • Post author:Patient Worthy Contributor
  • Post published:August 6, 2015
  • Post category:Cystinosis/Rare Disease

For a "normal" teenage girl, life's biggest problems usually include not being able to decide which outfit to wear to school, which boy to say yes to for the upcoming…

Continue Reading This Girl Got a Kidney for Her Birthday, And It’s Awesome!

How to Get the Word Out on Rare Diseases While Naked

  • Post author:Patient Worthy Contributor
  • Post published:August 5, 2015
  • Post category:Cystinosis/Rare Disease

The Cystinosis Research Network (CRN), a charity organization based out of Chicago, just finished hosting their summer travel conference, "Dream, Achieve, Inspire" International Artwork Showcase. Over 100 artists were featured, from…

Continue Reading How to Get the Word Out on Rare Diseases While Naked
You’ll Want To Know What This Scientist Found Out About HAE
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You’ll Want To Know What This Scientist Found Out About HAE

  • Post author:Patient Worthy Contributor
  • Post published:August 5, 2015
  • Post category:HAE/Rare Disease

Hereditary angioedema, or HAE, is a life-threatening rare genetic disease with a lot of still-unanswered questions. However, scientists at the Karolinska Institute in Sweden, Science Daily reports, may have answered…

Continue Reading You’ll Want To Know What This Scientist Found Out About HAE

If Music is the Window to the Soul, This is Stained Glass

  • Post author:Patient Worthy Contributor
  • Post published:August 5, 2015
  • Post category:CVID/Rare Disease

Do you know who Maree McRae is? If you don't, read her in-depth interview featured on HollywoodtheWriteWay.com. Or, for all you lazies, here are the bullet points: McRae is a singer/songwriter who…

Continue Reading If Music is the Window to the Soul, This is Stained Glass

Man Embarks On 1800 km Bike Ride, All for this Little Girl

  • Post author:Patient Worthy Contributor
  • Post published:August 4, 2015
  • Post category:Cystinosis/Rare Disease

Dan Giancola is about to take the ride of this life. Literally. The St. Catharines Standard details his mission to raise more than $100,000 for Abbi, a nine-year-old girl fighting…

Continue Reading Man Embarks On 1800 km Bike Ride, All for this Little Girl

The Empire Strikes Back! This Company’s Valiant Effort Saves Lives

  • Post author:Patient Worthy Contributor
  • Post published:August 4, 2015
  • Post category:Familial Hypercholesterolemia/Rare Disease

July 21st, 2015: Pharmaceutical giant, Amgen, was awarded a stunning approval from the European Commission for Repatha, a breakthrough cholesterol-lowering drug as reported by the St. Louis Post-Dispatch. The drug…

Continue Reading The Empire Strikes Back! This Company’s Valiant Effort Saves Lives
This Dead President Lives Again Through the GLUT1 DS Community
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This Dead President Lives Again Through the GLUT1 DS Community

  • Post author:Patient Worthy Contributor
  • Post published:August 3, 2015
  • Post category:GLUT1 DS/Rare Disease

Honest Abe’s blog, a catch-all site for video games and science, can now add rare disease champion to its description. The real Honest Abe was known and will forever be…

Continue Reading This Dead President Lives Again Through the GLUT1 DS Community

Here are 7 Yummy Things People with FH Can Actually Eat

  • Post author:James Stone
  • Post published:August 3, 2015
  • Post category:Familial Hypercholesterolemia/Homozygous Familial Hypercholesterolemia/Rare Disease

Even when your LDL cholesterol is shooting through the roof, it can still be tricky to want (and choose!) the “healthy” thing to eat. But we’ve made it easy. These…

Continue Reading Here are 7 Yummy Things People with FH Can Actually Eat

A Little Girl Enters a Room of Jocks, Leaves with Their Hearts

  • Post author:Patient Worthy Contributor
  • Post published:July 31, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Olivia Trueb lives every teenage girl's dream. As in, she’s got a team of professional football players that are wrapped around her finger, and much to her surprise, she can…

Continue Reading A Little Girl Enters a Room of Jocks, Leaves with Their Hearts
Move Over Barbie. This is the Model Little Girls Should Idolize

Move Over Barbie. This is the Model Little Girls Should Idolize

  • Post author:Rebekah
  • Post published:July 31, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Charis is a Californian, advocate, activist, avid biker, blogger, and model. She was awarded the  2014 Progress in Policy Award by the Arthritis Foundation, Pacific Region last December for her efforts…

Continue Reading Move Over Barbie. This is the Model Little Girls Should Idolize

You’ll Never Guess How Being Cheesy Saves This Girl’s Life

  • Post author:Patient Worthy Contributor
  • Post published:July 29, 2015
  • Post category:GLUT1 DS/Rare Disease

Most parents are eager for their child's first words. But as the Daily Mail in the UK reports,  Stevie and David Taylor waited in vain for three years to hear…

Continue Reading You’ll Never Guess How Being Cheesy Saves This Girl’s Life

Cops Raid These Kids’ Lemonade Stand, Ends Better Than You Think

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:Cystinosis/Rare Disease

Jake Krahe, a youngster from Montville Township, Ohio,  has been living with a rare disease since he was 19 months old 19 Action News reports. The specific diagnosis is cystinosis, a…

Continue Reading Cops Raid These Kids’ Lemonade Stand, Ends Better Than You Think

More Orphans Need to be Treated Like These FCS Patients

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:Familial Hypercholesterolemia/Rare Disease

If you’re one of the very few people in U.S. living with familial chylomicronemia syndrome (FCS), the odds are good you that you know more about it than your family…

Continue Reading More Orphans Need to be Treated Like These FCS Patients

Is the Answer to Glut1 DS Patients’ Seizures Really a Thermostat?

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:GLUT1 DS/Rare Disease

Glucose. It means sugar, right? It's in your body, right? But how does it get transported, and how does your body know how much it needs to transport? Most importantly,…

Continue Reading Is the Answer to Glut1 DS Patients’ Seizures Really a Thermostat?
How to Stop Your Child’s Seizures with a Magic Bean
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How to Stop Your Child’s Seizures with a Magic Bean

  • Post author:Patient Worthy Contributor
  • Post published:July 28, 2015
  • Post category:GLUT1 DS/Rare Disease

Have you ever heard of Glut1 deficiency? Based on a story featured on News-Medical, neither had the parents of their diagnosed daughter 4-year-old Chloe Olivarez. Glut1 deficiency is a rare…

Continue Reading How to Stop Your Child’s Seizures with a Magic Bean

How to Impress Your Trainer By Knowing These 5 Cholesterol Terms

  • Post author:Patient Worthy Contributor
  • Post published:July 27, 2015
  • Post category:Familial Hypercholesterolemia/Rare Disease

Heterozygous Familial Hypercholesterolemia (or HeFH), ever heard of it? It’s a mouthful. It’s also a condition that causes highly dangerous cholesterol levels and, if left untreated, can lead to heart…

Continue Reading How to Impress Your Trainer By Knowing These 5 Cholesterol Terms

3 Ways to Be a Badass Like This CVID Baseball Player

  • Post author:Patient Worthy Contributor
  • Post published:July 24, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

Mangled finger? Severe bone bruise? Broken back? Nope, this isn’t a catalog of injuries from Fight Club—these are some real injuries the Miami Herald describes that now 21 year old…

Continue Reading 3 Ways to Be a Badass Like This CVID Baseball Player

CGD Used to be a Death Sentence, Until Women Like This Took Action

  • Post author:Patient Worthy Contributor
  • Post published:July 24, 2015
  • Post category:CGD/Primary Immunodeficiencies/Rare Disease

It’s not often that rare diseases cross with pop culture, but when they do, it’s worth tuning in. This summer, Lifetime Television show, “The Balancing Act,” featured an educational episode…

Continue Reading CGD Used to be a Death Sentence, Until Women Like This Took Action

An Art Exhibit is Traveling 6000 miles, Here’s Why You Should Care

  • Post author:Patient Worthy Contributor
  • Post published:July 23, 2015
  • Post category:Cystinosis/Rare Disease

For a disease that has so little attention drawn to it, there’s quite a few people that want to bring it to the forefront in the form of a traveling…

Continue Reading An Art Exhibit is Traveling 6000 miles, Here’s Why You Should Care

This Little Girl’s Diet Will Make You Wish You Had a Rare Disease

  • Post author:Patient Worthy Contributor
  • Post published:July 23, 2015
  • Post category:GLUT1 DS/Rare Disease

If your doctor told you that you could eat pizza, meat, and other high-fat foods daily you would probably sign up for that prescription immediately. But if the catch was…

Continue Reading This Little Girl’s Diet Will Make You Wish You Had a Rare Disease

These Smelly Rodents’ Sacrifice for Children Will Warm Your Heart

  • Post author:Patient Worthy Contributor
  • Post published:July 22, 2015
  • Post category:CGD/Primary Immunodeficiencies/Rare Disease

When you have a rare disease like chronic granulomatous disease (CGD) and have spent the better part of your life being poked and prodded by (hopefully) well-meaning doctors, it’s easy to feel…

Continue Reading These Smelly Rodents’ Sacrifice for Children Will Warm Your Heart
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